Challenges

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We have received these suggestions to help you retain your identity and sense of self. We hope these comments help you retain positivity and increase your self-esteem whilst living with or beyond a cancer diagnosis.

MCI (Mild Cognitive Impairment)

MCI can happen during/after treatment fro cancer. MCI means changes in memory or concentration that can sometimes happen during and/or after cancer treatment and is also referred to as chemo brain. Some MNINC friends have recommended brain games to help exercise the brain. Try sudoku, word searches, or download an app like the braintrainer (join us on facebook and let us know which ones you recommend) ps worth noting that solving simple puzzles on a regular basis boosts confidence and gives you a sense of achievement!

Coping with Prickly Heat

If you've been struggling with prickly heat (that awful itching caused by getting too hot which is hard to avoid given the current wonderful weather) we've heard cutting out dairy may help!

Prickly heat (heat rash) is more likely to affect fair-skinned people and tends to occur in hot, humid climates (which doesn't happen very often in the UK) however, it's caused by overheating which triggers a histamine-like chemical release and over-production of sebum which blocks the sweat glands particularly when skin is damp (and/or coated in suncream!)

Some fab tips and advice include:

Wear lightweight, loose, breathable clothing made out of natural fabrics (can make you feel more comfortable)

Have a cool bath with baking soda or oatmeal

Avoid hot baths and showers

Only use soap once a day, ideally in the evening, followed by a shower in plain water in the morning

Steer away from hot drinks and spicy food

If you're taking antibiotics stay out of the sun as certain types can increase the likelihood of heat rash (but if you've had treatment for cancer you should avoid direct sun anyway)

If you're prone to heat rash you may have an underlying food sensitivity which makes the skin super sensitive and more likely to flare up in the heat. Try not only cutting out dairy, but remove wheat products, peanuts, coffee, eggs, citrus fruits, chocolate (and shellfish) and then reintroduce one of these every three or four days to see if there's a reaction.

Hope this helps! Stay cool :)

Admin

Nocturnal Hyperhidrosis

Have you every woken up absolutely drenched in sweat but freezing cold at the same time? You may be suffering from Nocturnal Hyperhidrosis - a side effect caused by cancer (and some treatments for cancer too!)

There's an organisation that was created thanks to a cancer patient who suffered with this side effect and who created a sleepwear range to help alleviate the symptoms! Check out their website HERE...

Mouth Ulcer Solutions

I used adcortyl in orabase for mouth ulcers and it's amazing. It's like a glue you put on the ulcer and immediately it's stops getting aggravated and the pain goes, and they heal up within a day or two. It's a bit sticky though and my tongue accidentally got stuck to my teeth a couple of times (lol) but it worked really well.

Try using a gauze wrapped wooden tongue depresser to hold the tongue or cheek out of the way and a cotton bud to apply it as this helps and I found to be the best solution to apply it where it's needed.

Whatever you do, DO NOT ignore a mouth ulcer... especially is you're receiving treatment for cancer! Apart from being painful you may get an infection in the lining of your mouth if it becomes sore and covered in ulcers, or if the number of white blood cells in your blood is reduced! You need these cells to fight infection and if you're not already aware of it, chemotherapy can temporarily reduce them, so for a while your resistance to infection may also be reduced!

Talk to your team and ask them to help you find the best solution for mouth ulcers, as there are lots to choose from and you have to find the one that works for you:

Triamcinolone acetonide dental paste which has no taste and is good for children coping with mouth ulcers. Put it on before bed or when there are long period of no drinking or eating so it can stay dry. Usually heals in a matter of few days

I've also heard that Iglu ulcer paste is good!

HF

Fluid Retention

There may be times you can't pee or going to the loo is painful (and it isn't cystitis!)

This can happen (like it did to me) when the kidneys continue to make urine even though your bladder can't empty (which can be VERY uncomfortable) or could be a side effect of your medicine (or due to your cancer)

Whatever the cause, tell your team so they can run some tests to find out if there's something blocking your bladder or if your kidneys are struggling! Not treating fluid retention can make you feel really poorly, as the waste that's in your wee can be pretty toxic!

Warm baths can help, however be prepared to have a catheter (which isn't pleasant, a bit embarrassing and is uncomfortable to put in) but rest assured from someone who's been there done that, any discomfort is quickly forgotten when you manage to go to the toilet!

Relieved!

How to apply for a Medical Exemption Certificate

If you live in the UK, ask your doctor for an FP92A form. Your GP or hospital doctor will then sign the form to confirm your statement is correct (or the practice manager who' s got access to your medical records can sign the form on behalf of your GP)

The MedEx lasts for five years and you'll need to renew it (* it's your responsibility to keep it up to date!)

The winter vomiting bug (Norovirus)

The winter vomiting bug (Norovirus) is the most common cause of diarrhoea and vomiting in the UK and is a highly infectious form of gastroenteritis which can strike very quickly!

As well as diarrhoea and vomiting, some people get a fever, headache, stomach cramps or aching limbs.

Thing is, you can get the winter vomiting bug several times because the virus is always changing (which means your body can`t build up resistance to it) and it can’t be “cured” because there`s no specific medicines that can be taken if you catch it!

The NHS says getting norovirus is sometimes unavoidable but that good hygiene can help. It advises:

Wash hands frequently and thoroughly with soap and water, particularly after using the toilet and before preparing food

Avoid sharing towels and flannels

Disinfect any surfaces or objects that could be contaminated with the virus using a bleach-based household cleaner

Wash any clothing or bedding that could`ve become contaminated with the virus separately and in hot water

Flush away any infected faeces (poo) or vomit in the toilet and clean the surrounding toilet area

If you are coping with cancer:

Give your team a ring to get advice, especially if you are taking oral chemotherapy or regular medicine as part of your home regime as diarrhoea and vomiting can affect the effectiveness of these drugs

Ideas for coping with chemo...

Here are some ideas I found on the internet that helped me cope with chemo:

Stick a bar of soap under your nose and sniff to help get back lost senses of taste and smell.

Use Listerine strips to help relieve pain from mouth sores.

Feel free to cry on someone's shoulder (and don't be afraid to ask for a hug)

Ask a close friend or family member to stay with you if you're having a particularly bad day after a chemo treatment.

Eat yogurt to help with problems with digestion caused by chemo.

Wear comfortable slip-on shoes or slippers to your sessions.

Hope they help you too!

AN

Seasonal Flu..

Plan ahead... because people with cancer (or a history of cancer) are at risk of serious complications if they get flu!

Get a seasonal flu shot made up of inactivated (killed) viruses.

People with cancer SHOULD NOT receive the nasal spray vaccine because they contain live viruses so the flu shot is safer for those with a weakened immune system!

Anyone living with (or caring for) cancer patients and survivors should also get vaccinated against seasonal flu too.

Contact your GP for more information or speak to your medical team to get advice

Admin

Return to work

Guessing, expecting and experiencing a return to work after coping with cancer are all very different! My advice:

Follow your gut instinct

Similarly to coping with treatment, look at each day on its own and get the the finish line of that day first before second guessing what you will be able to do in advance

Sleep is worth gold

Look at the beautiful things around you that help you to smile. Stop and smile at them.

It's completely normal to have a 'wobble', cry, feel confused, unsure and scared

You're not alone

Acknowledge that this is a huge milestone and be proud of your big step forward

Not everyone is going to be able to understand your journey and that's ok

Talk to someone you can trust at work who can listen and provide suggestions on solving any issues and who can understand that you may not need to act on anything, you're riding the storm of adjustment!

Believe in your capabilities!

Liz Ellis

Foul metallic taste

Boiled sweets such as pear drops or lemon sherbert really take away that foul metallic taste!!

B Castle

Back to School

If you`ve taken time off I guess you`ll be feeling anxious about all the work you`ve missed! We all know it`s important to start back at school as soon as possible, however be real! Its scary!

My advice - don’t be afraid to ask for help from EVERYBODY! Doctors, nurses, teachers, CLIC Sargent social workers, Play Specialists - everyone! After all, if it makes your life easier, it`s worth it!

Also, did you know that it`s okay to return to school part-time because chances are you`ll probably feel exhausted (remember that school is not all about learning! Being social`s important too and is hard work!) Gradually build up to full time as you get used to it and see how your energy levels hold up!

And finally, don`t be a muppet! Teachers are not mind readers! Chances are they haven`t got a clue what you need and will need you to tell them how you`re doing: so be cool, be kind and be guided... by you!

Anon

Pudding for starters!

When you`re having treatment, the normal 'rules' at mealtimes don`t exist! Most people have a preference for sweet or savoury dishes, however taste changes and emotions play a huge part in what`s acceptable when you have cancer! Puddings don`t have to be for dessert and can be an alternative to a savoury 'main' dish! Its also not unusual to find it really difficult to eat two courses in one sitting when you are feeling ropey from treatment, and if this is the case, don`t be too hard on yourself as most people feel this way too! Just eat what you can manage and if you are dropping weight, consider regular snacks to increase calories inbetween mealtimes!

Anon

Ladies... this is personal!

Don`t suffer in silence!

Some of the treatments for cancer can leave your vagina dry and make sex painful! Talk to your nurse about this however, try Replens, a hormone free lubricant on prescription or available over the counter (that`s also very safe for people on hormone treatment)

It is BRILLIANT and works wonders! I don`t mean to embarass anyone, however I used to cringe at the thought of my partner wanting to get close, because getting close and personal would cause me so much pain, a healthy sex life was impossible! Replens is fantastic and I wish I`d known about months ago!

If you know what I`m talking about... I really hope this hint helps!

Anne

The 'smell' of hospital...

I found that I felt sick as soon as I smelled the alcohol hand gel and wipes in hospital! So, to combat this I always take a hankie with some essential oil on – I look silly sniffing it as soon as I get out of the lift but at least I don’t vomit before anything is done! Try it... it really helps!

Liz Dando

Boxing clever!

If you`ve a lot of pills to take, invest in a large weekly medicine box and ask your family/friend/nurse to help you fill it in if you`re too tired!

By keeping a list of all your medicine with you at all times, it`s easy to update... and by having your tablets in one place will help you remember what you`ve had and when (so you don`t forget!) Clever eh?!

The seven day box isn`t expensive and you can buy them online at Amazon! I`d be lost without mine!

CB

Live Vaccines

I`ve lymphoma and have been advised against having any holiday jabs because of my weak immune system (and I think this applies to any cancer which is why I am writing in!)

Finding out more, I wanted to let you know to be aware folks - you perhaps shouldn’t have live vaccines if you`ve had chemo, radiotherapy, a transplant… or if you`ve had steroids as part of your regime (because they can weaken your immunity for up to three months!!)

I`ve heard that having these vaccinations with a weak immunity can cause real problems so I think it`s worth knowing, especially if you think you`re doing the right thing by getting vaccinated before going on holiday! Ask your oncology team... they will know! Hope this is helpful Ps: live vaccines include measles, mumps, rubella, MMR, polio, typhoid, BCG and yellow fever!

SB

Going on Holiday

I read somewhere that most travel companies have a medical officer to help in the decisions as to whether to travel or not (all about being safe and being practical and wheres best to go on holiday)

I had advice from my medical team (who were cautious) however the help I had from my travel company was great… and they even helped with my flights as I had a wheelchair (so got special treatment and was ‘loaded’ first lol)

I had to let them know that my team were happy to let me travel, and took a letter explaining about my cancer and meds (and I also had a steroid band so if anything happened at least the doctors would know what to do!) so don`t be put off this summer, talk to your team, make contact with a decent travel company and go get a break!!

Anon

Waving a wand...

If you are suffering with nausea, an aromatherapist can help by combining specific oils... and making up a wand to waft under your nose. I had one with spearmint, cardamom and mandarin and it really helped!

Julia May

Hairy moments!

My tip for anybody going into hospital for any major operations is shave your arms, as I had more needles falling out because the tape holding them in, didn`t work!

Steven Stockdale

Cheesy Grin!!

If you`re taste has changed during treatment, I`ve a few suggestions (from experience) that may be helpful:

Always use special mouthwashes (these may already part of your care pack but if not, ask your oncology nurse, doctor or dentist about mouthwashes that might help, as well as advice on any other ways to care for your mouth...

AND, although you have cancer, don`t forget to go to the dentist! Having cancer doesn`t make you immune to problems with your teeth and gums (in fact having treatment for cancer probably makes this worse) so get a check up, as the dentist can then make sure your change of sense of taste/smell is not from a bad tooth or any other dental problem!

ps... one of my favourite dentist jokes: Did you hear about the man who put his false teeth in backwards??? He ate himself! :)

Rob

Keep your glasses on!

If you have trouble keeping your glasses on, try getting some elastic with holes in, so that the arms of your glasses can go through, and you will find it works like a type of hair band!

Anon

Walking on Tip Toes

This probably sounds really wierd, but during my chemo for Leukaemia (I was on high doses of vincristine) I started walking on my tip toes!

I didnt notice it at first, and it was my g/f that pointed it out! I told my nurse immediately and had to see a physio! Things improved as I hadnt left it so long, but if ignored ths couldve been a real problem!

So I think it`s really important that if you notice any side effects or if something just isnt right (like I havent ever walked on tip toes) speak to your team asap and if you need to see a physio, do as your told, as the exercises help!

Jake

Scar Tissue

I had Bone cancer and needed extensive surgery. I was desperately worried about the scar as it was big and prominant... and really obvious! I found that rubbing E45 cream on the area daily, made it fade alot (and I mean really a lot!) So much so, it`s just like a think silver line now! So don`t be fazed... have the surgery you need, and whilst your body is healing... lending a helping hand by using some E45!

Anon

Road Tax in the UK

Did you know that if you drive a car and getting the higher rate of the mobility component of Disability Living Allowance (or the War Pensioner's Mobility Supplement) you`re exempt from Road Tax in the UK! I`ve just found this out through the Department for Work and Pensions... great news and wanted to pass it on as every little helps!

Ice pops

Im having high dose chemo and just want to say some types of chemotherapy can give you nasty mouth ulcers and you can feel your mouth tingling as you`re have your treatment (thinking “oh no…here it comes!”)

Sucking an ice pop at the same time as having your chemo can really help (you know...the ones in the long clear plastic tube that come in different flavours and as it melts, you end up with fruit juice at the bottom to drink!)

Kim R

Getting a second cancer

Depending on all sorts of factors (your type of cancer, treatment, genetics and general health) cancer treatment can increase the risk of getting a second cancer! It`s really hard to understand and I felt very angry that medicine wasn’t able to give me a treatment to ‘cure’ my disease, without increasing this risk!!

I had to consider this information as cancer scares the hell out of me and the thought of another one wasn`t something I wanted to think about!

I understood that chemotherapy and radiotherapy may damage my normal cells which may turn them into cancer years later, and I “got it” that if this happened, it wouldn’t be like having a relapse or recurrence as it`d be a totally different cancer, however I ended up wasting valuable time trying to decided if this was risk worth taking!

My tip is that life is already too short, and it would be a bit foolish to refuse getting something sorted if medicine had worked out a way to help you right now, for fear of what ‘might be’!)! I`ll try and worry about the future when I get to it! For now, I`m accepting everything my doctors can throw at me… and I hope you are able to do the same! We`re all in it together, so game on!

Anon

Bowel problems after Bowel cancer...

I was diagnosed with Bowel Cancer. Surgery, Chemo and radiotherapy were all part of my regime. I know from experience that the advice and help from stoma and colorectal nurses can vary greatly from hospital to hospital so have two suggestions that may help:

Pelvic floor exercises are essential and really do help. Try and do them prior to any surgery and continue throughout until you`ve had the reversal…and then even more! Control of the bowel is improved if you do and they definitely help! They are just as important for men as they are for women! Imagine you are just about to pass wind or have a ‘poo’ in front of a room full of people and you need to hold it in: clench those muscles for a count of ten, relax and repeat

Buy a key from Radar (cost about £4.00) It isn’t widely publicised but this key will give you access to 7000 locked public toilets… great if you are out and about and need the loo urgently! It`s run by the Radar National Key Scheme (NKS) and you can contact them by looking on the web or phoning 020 7250 3222. People with cancer are entitled to use this system although it’s not publicised!

If you are still struggling with bowel problems following reversal, go back to your stoma nurse and tell them it`s unacceptable and they must do something to help. Don`t suffer in silence! I hear there`s a machine that can stimulate the muscles and this may be available to you. Either way, they can give you more advice but it`s good to know what you can do to help yourself as well.

Hope it helps, good luck

Radiotherapy and 'runny tummy'

As part of my cancer treatment, I`d had radiotherapy to my pelvis.

I started having awful squits (diarrhoea/runny tummy/shits) and was too embarrassed to say anything to the nurses (I`m a 30 year old bloke and my nurses were all young women... sound like heaven but really, isn`t!) Thinking I could get some control myself, I tried the usual tips, avoided food and fibre that would upset me, however I started to feel really crap and had to tell someone!

I didnt kow that whatever i did to try and control my diarrhoea wouldnt work as it can be a side effect of the radiation to the pelvis (must`ve missed that bit in the pep talk!) and the only thing that would help was prescribed medicine from my consultant (more meds to counteract the meds along with the meds already being taken...wow!)

They worked a treat though and got me through radiotherapy without any other real problems :)

So my advice... dont be a twit like me and suffer the shits in silence! If you are unwell AT ALL during/after ANY radiotherapy (especially to the pelvis area) tell someone immediately because you may need help to control things(or better still, listen and make some notes when you`re given information and instructions, just incase you dont take in whats being said first time around!)

Fatigue

As I got further into my treatment program, I became so tired I didn’t have the energy to do anything (and I mean anything!) I felt weak all the time, couldn’t think for myself or make decisions and was kind of light headed. I also had absolutely no sex drive (something I still get really emotional about!)

One of my consultants would tell me I should get some exercise, which then made me feel guilty because I was too tired to walk let alone exercise! Bit of a vicious circle really.

I didn’t say anything about how I was feeling, thinking I could just ignore it all (though who was I kidding?)I ended up being really snappy with one of the nurses who was always lovely with me, which ended up with me being in tears as I am not usually a irritable person ( Irritability is a symptom of fatigue, as well as: no energy; can`t sleep; feeling weak; no concentration; bad memory etc!)

She checked to see my recent blood tests showed I didn’t have anaemia (could be a cause), so the fatigue wasn’t due to that, and recommended we get the physiotherapist, who came to see me. With her help, I started gentle exercise which was easier to do as I had her encouragement (and the way I was feeling I wouldn’t have been able to do them on my own… i had no motivation!)

There are things that can be done to help fatigue, but in truth the things I tried really didn’t make a huge amount of difference, but doing something was better than nothing! For me, it was one of the side effects of treatment and my illness, and I just needed to run with it until it passed!

Eventually things did improve, but then I would then overdo it (sometimes you just can`t win!:)

So, to everyone, if you are experiencing fatigue: hang in there; talk to your nurses; try the things that may help; and if not, be patient with yourself (remember: you are already going through a lot without being hard on yourself!) And don’t forget to allow people to help :)

ANON

Getting Financial Help

Having cancer is hard enough however the financial implications that having time off work or needing help with children/home/travel etc, can be an added stress!

There are some good organisations that can help, either by giving advice about benefits or providing grants to help... but where to look and who do you speak to?

In the cancer unit I attended, there were benefits advisers and I had a meeting in the Macmillan cancer support centre, with a specialist who visited the hospital twice a week ( although I now understand you can access this advice directly via their website.

Your local social security office can give you information about any benefits you may be entitled to, though I found this process hard work and appreciated the support of my Welfare Rights team, a service provided by my local county council, who helped fill in forms and were up to date with all the new legislation and very informed about the requirements that apply in order to qualify.

The Department of Work and Pensions, provided information, and a web address that I found useful was http://www.direct.gov.uk. Search the section for disabled people and also the caring for someone page is useful

Dont be put off...do get help. I did and although difficult to face at the time with everything that was going on, I`m so glad I did! By sorting your finances, you can concentrate on getting well. Worrying about money takes up valuable energy which is best served focusing on 'being kind to yourself' (see... I have read the MNINC Publication on "Wellness"!)

ANON

Bone Marrow Biopsy

Bone Marrow Biopsy's are a big part of a leukaemia diagnosis and they become part of your life for a while and let's face it, they are not nice! A blood test can be scary enough for some people, so the thought of a thick needle going into your hip can be quite daunting!

My advice would be to make sure you ask for gas and air (entonox) which will calm you down a lot and feel much more relaxed (sometimes docs forget to ask) Remember...you're entitled to it, and you don't want to be in any unnecessary pain.

People deal with it in different ways...I tended to talk and talk and talk (rubbish I might add) to help me take my mind of the uncomfortable feeling.

After the biopsy's done and the local anaesthetic has worn off, I found it helped to put heat on the hip to ease the pain.

Jen Bailey

Radiotherapy and shaving

I had radiotherapy to my upper neck and would normally wet shave. However, my skin became sensitive and I was advised to use an electric shaver instead. I also noticed that I had a baggy area of skin develop under my chin after treatment (a bit like a double chin!) The area was soft and swollen though didn’t hurt! It can be a side effect of radiotherapy to this area and went away after a few months. Using an electric shaver stopped my face getting chapped and reduced the risk of cutting myself!

SW

Mouth Ulcers

When I had chemo I had mouth ulcers. I used the mouth washes etc that the nurses advised however still got a couple of ulcers. Drinking was a problem until I tried using a straw…brilliant… really helped.

Anna from Ireland

Do what you want to do

Do things that you love to do when you feel up for it. I was constantly shopping

Remember you are still you. You may not look or feel like you. But you are still you, take this illness as a challenge.

VS

Jealousy!

Limit your time on Facebook especially on Friday/Saturday nights I found I got overwhelmed with jealousy at a weekend with all the "I am going here there blah blah living my life" statuses whilst I was spending my Saturday night hooked up to a machine. It didn't do me any good so I contacted my friends by phone or text instead.

VS

Out and about

Try not to stay in. At first, I used to always stay in because I was not happy about the way I looked and I didn't want to bump into anyone. The doctors were worried and said it was unhealthy so I started going to places like garden centres and places I knew I would not know anyone. But then after a while, I built up enough confidence so I could go out anywhere and not care whether I saw someone or not!

VS

Sleep

I found it hard to sleep until I was advised to spray lavender on my pillow. I got it from The Body Shop and also bought some massage oil. I massage my lower legs, feet, ankles, calves. It's very relaxing, sleep comes easier for me and makes my room smell nice too.

MF

Shopping

Pushing a trolley round the supermarket is hard work. I thought it would be easy but was totally exhausted…even before I packed the groceries! If you have internet access, do try the stores that do home delivery…a good way to conserve energy.

MF

Financial

When diagnosed with cancer, it can impact on your financial situation. You may not be able to work, or need help with your family.

The Welfare Rights officer linked to your local council will be able to advise you as to what benefits are available. If you have a Macmillan social worker or other support worker, they may be able to help with DLA forms (Disability Living Allowance). These forms are a bit grim, and are not at all user friendly (be warned!) I STRONGLY recommend you have help filling them in.

MF

Getting around

If you have a car, you may be entitled to a blue badge. Check out your local council for advice.

As a safety point… be careful driving if you are undergoing treatment! Your concentration may be reduced. If you have been awarded a blue badge…it applies to ANY car you are in, so you don’t have to be the driver! Keep your independence, but do look after yourself.

MF

Chemo brain

The condition referred to as chemo brain hasn’t really got anything to do with chemotherapy. It's being absolutely tired out from any ongoing and intensive treatment.

If you are affected it can feel totally debilitating and even thinking can be too much effort (hence the chemo brain title!). I hated this feeling so to try and get my brain back I started doing something that I was already familiar with. I did GCSE maths and loved it so started going through the workbooks again. It was something I had already achieved in so was familiar. It really helped "get me going" again!

I would suggest that if you are experiencing the same…try going over something you have already done (it doesn’t have to be maths…I know I'm a bit weird!) and then introduce new challenges. Make it all manageable and not overwhelming, things that are achievable!

MF

Getting tired

I really wanted to be at home but get very tired. I have been taking steroids as part of my treatment and my muscles are a little weak as a result. My community nurse specialist co-ordinated with the different organisations in my area and occupational therapy then assessed my living conditions (not the amount of dust, but ways to help overcome any problems). I had a seat put in the shower and a stool by the sink! My physiotherapist also advised me on the best way to manage moving around until I am stronger.

MF

Self esteem

I have low self esteem. I don’t feel me anymore and I look different. My hair is returning (far too slowly) and my nails have become brittle. I have decided to do something about it and take better care of myself.

For me this includes getting vitamin E solution for my nails and wearing a bit of lipstick… as a little lift! The response I have had has been amazing…everyone has noticed and I feel great. Whether you are male or female, if you are challenged by low self esteem…do something nice for yourself.

MF

We hope you have found this section useful. If you would like to contribute advice/hints/tips on coping with cancer, please contact us